Chestnut Hill resident David Hale, 78, has been caring for his wife, Carolyn, who has Multiple Sclerosis, for 35 years. As a philosophy major, Hale read the book “Zen and the Art of Motorcycle Maintenance” and from it learned to approach life, work and then caregiving “with great peace of mind.” (Photo by Barbara Sherf)[/caption]

by Barbara Sherf

As National Caregivers Month comes to a close, retired Temple University theater professor and Chestnut Hill resident David Hale, 78, who has been caring for his ill wife, Carolyn, for 35 years, recently shared his strategy for being a good caregiver. As a philosophy major, he read the book “Zen and the Art of Motorcycle Maintenance” and from it learned to approach life, work and then caregiving “with great peace of mind.”

“One of the concepts I learned is that of suppressing the ego,” David told a small gathering of caregivers at the Center on the Hill, 8855 Germantown Ave., recently. Sandwiched between Wyndmoor resident Wendy Liebling of Liebling Eldercare, who conducts a monthly Alzheimer's support group at the center, and Elissa Lewin of Nancy’s House, a Wyncote-based non-profit that offers retreats and resources for caregivers, his message was simple yet profound.

Carolyn Coker, a resident of East Oak Lane, a caregiver for her mother who lives at Germantown Home, shared her thoughts. “It was nice to hear from another caregiver about how to deal with things,” said Coker. “The resources the panel shared will be very helpful, but his words will stick with me about suppressing the ego.”

During a recent visit to their museum-like and handicapped-accessible ranch home on St. Martin’s Lane, David and Carolyn Hale were frank in sharing their thoughts on caregiving and being cared for. A native of Raleigh, North Carolina, armed with a degree in English from Wake Forest University, Carolyn applied for a public relations position in the theater department at Temple University, where David was teaching. The working relationship turned into a personal journey that neither of them anticipated.

At first, Carolyn had had some dizzy spells. Then there was numbness in her upper legs. “When I got my first attacks of Multiple Sclerosis (MS) in 1963, doctors didn’t want to tell you what you had because it was so serious and there was still a lot of mystery about MS and very few treatment options. It never dawned on me that I wouldn’t get better. But finally I did some research and told the doctor, ‘I either have a brain tumor or MS.’ He said ‘You don’t have a brain tumor,’ and by then I was a librarian and did my research and learned what we were up against,” she said while sitting in a chair next to her red motorized scooter.

Carolyn, 74, worked for 30 years, doing stints at the Chestnut Hill branch of the Free Library of Philadelphia, as well as several other branches before finally settling in at the Central Library on Vine Street. David was moonlighting doing theatrical rigging for a Las Vegas stage effects company called Flying by Foy, traveling in the U.S. and abroad, while worrying about Carolyn. He remembers volunteering to rig “ghosts” at Fright Night at the Chestnut Hill Library as Carolyn was in charge of the Halloween event and saw the toll the event had taken on her.

After a promotion to a position heading the library branch, she had a serious setback, landing her in bed for eight days. “It’s fascinating how you can fool yourself and pretend you’re not sick,” she said. “As one being cared for, it’s hard to acknowledge your limitations and admit you need help.”

While giving a tour of the home, David showed off Carolyn’s newly equipped handicapped bathroom, complete with bold red paint and an open shower. The guest room is set aside for their 17-year-old cat, Samantha, along with a huge white medicine ball that David warms up on before he does his daily workouts. Steps away is his office, with a desk that he stands at, sits an array of weights he uses daily and a pull-up bar in the entryway.

“I do yoga and work with the weights and have an exercise bike in the garage. It’s my form of meditation,” he said. “I also realize I have to stay physically active, even if Carolyn can’t. There are times when I need to transfer her to the car or in a restaurant, and I need to be in shape to do that.”

In addition to his daily workouts, David reads the comics every day, attends a monthly “Well Spouse” support group in King of Prussia and journals at his computer. David’s recent visit to the emergency room for chest pain and an overnight stay at Chestnut Hill Hospital was a wakeup call for both of them.

“It was sobering,” said Carolyn. “I had to put together the pieces in my mind. Suddenly, I had to take care of myself. I called family and friends as backup, but I wanted to see if I could do It myself, and I did. Sometimes you don’t know what you can do when you have someone at the ready caring for you.”

David has two daughters from his first marriage; Julie Good, of Wyndmoor, works with Chestnut Hill resident Gail Harrity, President and Chief Operating Officer at the Philadelphia Museum of Art; and Gretchen Nauman, Ph.D, who has been teaching English for 25 years in China.

David was recently “pushed out the door” of their St. Martin’s Lane home to go to a daylong Nancy’s House retreat by his wife of 41 years. “It was as important to Carolyn as it was for me to go. That day made a world of difference in our relationship,” he said, adding that he has also participated in overnight retreats Nancy’s House offers.

“Because my world has narrowed and has limitations, that doesn’t mean he shouldn’t go. He feels responsible and wants to stay, but that’s not good for him or me,” Carolyn said, noting that she wears a small phone around her neck with a button to call him if necessary. “I try not to push that button. It’s very important for him to have some down time and friends and activities outside of this house and caring for me. The person being cared for has a responsibility to be concerned about their caregiver as a person and what his or her needs are.”

During this holiday season, Carolyn reflected on all she is thankful for.

“I feel very fortunate. There are so many people in much worse shape. I have a lot to be thankful for in terms of this home, the new van and above all, David caring for me.”

Barbara Sherf is a caregiver, writer, and founder of Capture Life Stories. She can be reached at 215-233-8022 or CaptureLifeStories@gmail.com.